An Intolerable Set of Facts

There can be few phrases that more accurately describe the current state of the fight against tuberculosis (TB) than ‘an intolerable set of facts’.

There are 1.3 million people dying of TB each year – around 3,500 every day. It’s the second-most deadly infectious disease in the world, behind HIV/AIDS, and is the biggest killer of those who are living with HIV. And it can be cured with drugs costing less than $20.

But these drugs are old. Because TB has been under control in developed countries for many decades, we haven’t seen advances in the technology to fight TB in a very long time. Discounting the welcome emergence of two new drugs in the last year that are still undergoing approval and which have prohibitively high costs, the most recent new TB treatment we have is from before we put a man on the moon.

Some of the drugs we use in the worst cases of TB come with the kind of side effects that make completing a course of them incredibly difficult. Patients can lose their hearing, become psychotic or suicidal, and have severe nausea and vomiting. The cures we have for TB are barbaric. But the other options for a patient with the worst forms of TB are to remain infectious, weaken, and likely eventually die a slow and painful death.

In vaccines the story is not much better. Despite being the most widely administered vaccine on the planet, the standard BCG vaccine offers limited protection to children and even less to adults. Launched in 1921, it is still the only vaccine we have almost a century later. While it may be more effective than we thought, it simply doesn't work well enough to protect adults from getting TB.

In diagnostics we have both challenges and opportunities. The main method used to diagnose TB hasn’t fundamentally changed since 1882 – not a typo, that’s 1882 – when the TB bacteria was discovered, and is to look for the germs under a microscope. Most of the world’s TB is still diagnosed this way. The new Xpert MTB/RIF test, launched in late 2010, has begun revolutionizing diagnosis, particularly in HIV positive patients and in quickly determining drug resistance. More cases are being found, faster, with fewer lost to follow-up and with patients getting the right treatment sooner.

And drug resistance is on the rise. Instead of $20 worth of drugs for a case of ‘normal’ TB, treating drug-resistant TB can cost 475 times that. The ECDC recently reported that in resource-rich Europe only one third of those with drug-resistant TB successfully complete treatment. The numbers are even more saddening in the developing world.

The number of cases of TB presenting that are, for all practical purposes, untreatable with the drugs we have is also rising. While not a designation that is officially recognized by the WHO, ‘totally drug-resistant TB’ is very real. It’s not often spoken aloud, but we have virtually nothing to stop the spread of totally drug-resistant TB besides hiding sick people away so their TB does not infect others, and then caring for them, at huge expense, until they lose their unfair battle with the disease.

While things have generally been improving in TB control and those working tirelessly to save lives and find new ways to fight TB deserve our utmost respect, praise, and thanks, the situation remains shocking, disgraceful, and terrifying.

These are an intolerable set of facts.

In the TB world we all too often assume that sharing these facts is enough to galvanize change and action, but the reality, sadly, is that this is not the case.

The fundamental problem with TB is that it overwhelmingly affects the poor and marginalized. With few exceptions (particularly in countries with high HIV rates, often not the most wealthy of countries), rich and middle-class people don't get TB. There are no celebrities banging the TB drum. There is no developed-country market that would cross-subsidize cheap TB drugs in the developing world. Just one organisation, the Global Fund to Fight AIDS, Tuberculosis, and Malaria, provides more then 80% of all international aid to fight TB, and there is no plurality of international support to fight the disease.

The movement to beat TB must be about more than just these intolerable facts: we must be more insistent, more strident, and more political in our calls for an end to this terrible scourge. Those who are currently battling TB deserve no less.